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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Sk2018 was a British citizen working in Hong Kong when he contracted HSV1 encephalitis. He flew home to the UK where doctors were unwilling)unable to diagnose him or treat him, so he returned to China, where he found a helpful immunologist at a hospital in Shanghai who properly diagnosed him and treated him with a number of things including Rituximab and Bortezimub to remove the antibodies that were producing his symptoms.
I'm not exactly sure where he went after that, but he ended up in a German hospital where they failed to understand his previous medical history or follow up appropriately. It seems that his autoimmune antibodies returned and that plasmapharesis, Bortezimub or Rituximab may have removed the antibodies again, yet the hospital just left him to rot and he died, tragically, at 38.
Running around the globe and getting care piecemeal in different languages is not optimal.
We must be talking about Sean? Still haunts me. The thing is, if it really was HSV1 encephalitis, he would need IV antivirals. Giving those meds that wipe out antibodies would make a person feel better in the short run but would make condition worse as the virus flourishes. Im not sure he had evidence if it was autoimmune encephalitis vs viral encephalitis. Ad if he had both, thats especially challenging. . Also haunts me because especIally because i had so many of the sane things as him. One of my takeways was that pursuing every possible treatment in whatever country will treat you (and many young, eapecially men try one treatment after another relentlessly) may not be the best approach to this beast either- give body more tine. If i reached the wrong takeaway and misapprehending what happened with sean over his years on the list, someone please correct me .
Unfortunately, there used to be the "Wild West" of medicine where anything went and patients died. Charlatans sold snake oil, or worse, poison, and care was not based in science. Then there was the era of standardization in the US, in the era of the Flexner Report and its aftermath, which then got exported to many other countries. Laws were encoded and medical boards empowered to protect patients from themselves and those would prey upon them, so that we could only be treated by those with 8 years of medical education.On rest of learners post, i doNt see why a smart well read person shold have to convince MDs of anything to get the care they need. Id like if the med system had an “opt ou” clause where you can be ykur own PCP. These folks have all contributed to killing me because they arent as knowlegeble or smart as I am. One of my internist misi trepreted law and accused me of trying to practice medicine without a liscence whereas i i am just trying to save my own life.
I do think one of the lessons to be learned is that it's ideal to have a coordinated team of doctors who can provide continuous care over a lengthy, complex illness, but honestly, I think that this is currently beyond the realm of any current medical system, except perhaps Nancy Klimas' clinic.
Unfortunately, there used to be the "Wild West" of medicine where anything went and patients died. Charlatans sold snake oil, or worse, poison, and care was not based in science. Then there was the era of standardization in the US, in the era of the Flexner Report and its aftermath, which then got exported to many other countries. Laws were encoded and medical boards empowered to protect patients from themselves and those would prey upon them, so that we could only be treated by those with 8 years of medical education.
Like you, I have educated myself a lot, and have amassed a library of resources and an understanding of the human body and medicine that has been helpful in my quest for health. Unfortunately, we did not get a medical degree and are left to try to convince our doctors (and clinics, hospitals, insurance, the FDA, and drug companies) to order tests and treatments that we believe will better illuminate and fix what ails us, it at least give it a good try.
The people we deal with on this journey have their own goals and constraints which may be in conflict with what we and our doctors are trying to do. At worst, it costs us in money or risky outcomes, while our doctors may lose their jobs, medical licenses, or reputations if they help us do something that seems right at the time but later proved harmful. So, we need to arm them with information to give them confidence to help us without risking undesirable consequences.
I sure wish this were easier, but, unfortunately, some not so smart or lucky people preceded us in this system...
So gathering good scientific information and resources, and sharing them logically with our doctors to have successes, and then exchanging info within a community like this to help others will gradually normalize good things that seem like fringe actions right now.
I have seen a lot of people do this in the cancer world, with mixed results. In it's best form, patients would educate themselves on the science, and the things they would choose to do would be based on their individual needs. I agree, and I sure would be for doing this, although some of the treatments that have helped me the most have been extremely expensive, and I've needed to have the support of either my insurance or the patient assistance program of a pharmaceutical company to help. Unfortunately, drug companies are charging outrageous sums because they can. And one thing that's happening right under our noses is that things that we have been able to buy as supplements are being quietly developed as "orphan drugs" For some rare indication so that the pharmaceutical company can charge an even more exorbitant price. So, having the knowledge and the will, but not a large amount of money, might prevent the strategy from being fully executable for most.Every citizen has the right to “opt out” and act as their own "pcp". If they do so, they would have access to all things mds do includdng billing insurance and subject to the sane insurance rules as an MD. They can also like an MD request consults with specialists, order imaging and other tests, order meds. (if the drugs are from a restricted class like opiates then they go thru the same red tape that MDs go through to argue that be used for their patients). . In exchange for this, one gives up the right to sue any doctor and of course the “right” to get a pcps management of care. So there's no big brother here. No one gets to decide who is and isn't smart or knowledgeable enough to take control. It's up to each adult citizen. The agreement one makes to opt out f conventional medical care can be revoked in writing at any time at which point they would go back to standard conventional arrangement.
I've very much thought the same over time. This is a really good idea! 😃the other 25K i would use to look into the feasability of building a community where people can live with CFS (chronic complex illnesses orf other sorts may be let in as well) . Small non toxic quiet easy to mantain houses in a community of likeminded individuals where members pay a small monthly fee (if can afford) so the community can set up what it needs- transportation help, handymen help, help lifting packagesm google search help, whatever. We are ourselves a helpful bunch so no doubt most would volunteer what they are capable of: teaching classes, cooking when others cant , hanging pcitures, whatever ones expertise and i terest is. No obligation of course and no judgement; it would just be a nice added thing to the paid vetted employees poeple in community could hire.